How long does it take?

[BarbaraH]

Hi -

Glad to hear you're with a rheumie from a teaching hospital and that he's been following you regularly all these months. Whew!

One thing I had a problem with that caused my joints (hips/knees/ankles) to swell painfully was my unexpected allergic reaction to Celebrex. Any chance that's one of the meds you're taking? Many folks with lupus become allergic to sulfa and Celebrex has a sulfonamide in its chemical makeup. The first doctor I saw started me on Celebrex and the rheumie was doctor #4 for me. He deduced most of my problems were complicated by the allergic reaction. Once off Celebrex and on Naprosyn, I had no more painful swelling in any joint. Glory be! Perhaps, perhaps this is also your situation?

Wishing you well! Barbara

[NHCasey]

Hi Barb,

Prednisone, MTX, Folic Acid, Leucovorin, Nefedipin, Hydroclorthiazide, Lotensin, Prilosec, Allegra, baby aspirin, Vit D and Calcium. That's the
long list.....

And to think I thought it was a pain to take an allegra each day, lol....
At least I'm better at swallowing pills. Nothing like lots of practice.

[VeeJ]

Hi, NHCasey. Wow... With your latest post citing the very high ANA & very high anti-RNP, your earlier post takes on a fuller meaning. I'm glad you have a top-notch rheumatologist & are seeing him frequently.

In his hardcover, Dr. Wallace discusses MCTD briefly, so I just re-read that section. He says the condition resembles lupus, but also includes puffy hands, heartburn, swallowing problems, and possibly interstitial lung scarring. Raynaud's is almost always present. (Great book, by the way! It's available in most libraries & bookstores.)

Dr. Wallace also says that in one study, 5% of SLE patients also met the criteria for MCTD. Which fits what your rheumie has called lupus + MCTD, I guess...? And you ALSO fit the full diagnostic criteria for RA & Sjogren's?

In his section on treatment, Dr. Wallace makes a point of stating that the antimalarials are NOT appropriate where there's major organ involvement. So that seems to fit with your dr's saying he's holding off because your numbers are still high. Maybe you can ask him to clarify further & properly?

Gee, I wish I had something practical, big & helpful to offer... I imagine you ALREADY take sun precautions, given that so much of what you experience falls within the framework of lupus? I hope you have much better days soon & that your upcoming appt. goes well. In the meantime, we'll all look for your posts! All my best, Vee

[NHCasey]

Thanks for reading that in the book Veej. Yes, the only thing he didn't do was the test for sjogrens where they take a little of the inside of your lip but my parotid glands get huge (I call myself a blow fish), my tongue is swollen a lot and I'm lacking the liquid in my mouth and my eyes are kind of dry. He said that with all of these, they take on a similar course of treatment anyway. He said that this is rare, as most the time you may have some symptoms of a couple of these autoimmune diseases but my numbers are not budging.

I'll be asking more questions this time. Everyone said that this will take time. Silly, but it is the hair and weight gain that brought me over the edge. I think I've handled this well so far for the most part.

I'm also going to get that book! Anyway, thanks for letting me rant and giving me some suggestions. I really appreciate it.

[VeeJ]

Good morning, NHCasey. I first borrowed as many books on lupus & its close cousins from my local library. Then I decided which ones to buy.

I was never formally tested for Sjogren's either, despite my being positive for ani-Ro (I have the SCLE subset of lupus). Weird, but this summer, for the first time in the 7 years since I was dx'ed, my eyes became so nastily dry & uncomfortable that I went to my eye dr. twice. The antibacterial ointment first prescribed made my eyes worse, so I d/c'ed it after a week & switched to artificial tears, per my eye doctor's instructions. Those liquid tears gave me immediate relief. (Just a thought.)

You hang in there, OK? And wear those hats, long sleeves & pantlegs, & sunblock if you're out during high sun, OK? (Can't hurt.) Thinking of you & hoping you find some relief SOON. Always, Vee